"I feel completely let down by the system"

I want to share my experience because I feel completely let down by the system and hope this will lead to change.

I have been struggling with severe symptoms for over a year, including heavy and prolonged bleeding, severe pelvic pain, and significant weight loss (nearly 4 stone). Despite repeated GP appointments, scans, and tests, I have not received the timely specialist care I urgently need.

I was referred under the urgent suspected cancer pathway for cervical and bladder cancer last month. NHS Lothian guidance and RefHelp standards say patients should be seen within 14 days, yet weeks have passed without this happening. My symptoms have worsened dramatically, and I now require strong pain medication just to cope.

Recent investigations have confirmed endometriosis, adenomyosis, an ovarian cyst, major adhesions causing my fallopian tubes to be stuck, and endometriosis in my abdominal wall, which could lead to a hernia. These are serious findings, yet there is still no coordinated plan.

What is most distressing is that no one is connecting the dots or looking at me holistically. Each issue is treated as separate, when it is very clear they are linked. I have a lifelong history of cervical pathology, including multiple abnormal smears, colposcopies, and a cervical stitch during IVF pregnancy because previous treatments left me with very little cervix. This should have flagged me as high-risk, but it has been overlooked.

The emotional toll has been immense. The delays and dismissive interactions have left me feeling unsafe and abandoned.

I am sharing this because I believe patients deserve better. We need joined-up care, timely action, and compassion. Please, NHS Lothian, review this urgently and ensure no one else goes through what I have.